1. What are application clinics? Expand They are informal, online meetings bringing together DEBRA members and EB researchers before they apply for funding, to discuss research proposals and shape them together. For members this is a chance to get closer to the EB research in the pipeline, and to put your questions about the research to the researchers themselves. For researchers it’s a great public/patient involvement (PPI) opportunity while getting your research proposal ready for submission. You can question those directly affected by EB about particular elements of your research design, or you can get feedback on the ‘abstract’ and ‘value to EB’ sections of your proposal.
2. What happens at an application clinic? Expand Members and researchers sign up in advance to attend the DEBRA application clinic. The researchers will send a draft version of an “abstract”, a short description of their research project written in non-scientific terms, before the meeting for the members to read. These will be marked as confidential and shared only with those members attending the application clinic. During the application clinic each researcher will have 20 minutes with the members to ask for feedback on the abstract or other elements of their research proposal. Members can quiz researchers about their proposal and share their lived experience of EB.
3. When is the next application clinic? Expand Our next application clinic will be held on Thursday 29th February at 6.30pm. If you are a DEBRA member or an EB researcher submitting a research proposal to DEBRA in 2024 please register your interest for this application clinic using this quick form. DEBRA will run the meeting and confirm the agenda once members and researchers are signed up. We will support both researchers and members to get the most out of the session by sharing information and clarifying the aims of each researcher for the session.
4. Why is this important? Expand We are all united in our vision for a world where no one suffers with EB. To achieve this, research into EB should be aligned with the needs of the EB community by involving people with lived experience in research from the design phase onwards. DEBRA’s grant approval process asks researchers to show how they have included PPI in their project design. All grant proposals are reviewed and scored by our members before our Board of Trustees makes the final funding decisions. So it can really pay to be able to explain clearly to a non-scientific audience what your project is, and how it will add value to the EB community. EB researcher and clinician, Dr Su Lwin, worked with DEBRA for PPI input into her research design, and says: My first experience of working with the DEBRA patient panel has been incredibly positive and helpful. I work on designing studies that sometimes involve invasive procedures for people living with EB. By discussing these aspects with people who have lived experience of EB, I was able to understand which parts of the study were relevant or not; and what types and how many procedures were acceptable to them. These details were absolutely crucial in helping shape my recent major grant application on the project - Art-EB - for the Medical Research Council Clinician Scientist Fellowship. I am very grateful to DEBRA UK for helping organise the EB patient panel meetings, and the panel for helping shape my application. Dr Su Lwin